Epilepsy centre, observed seizures

[eclectic hectic epileptic]

Hello everyone,

I'm still pretty new here but I'm really enjoying the atmosphere and people! And I just wanted to write about my seizure here and ask about anyone's experiences with controlled, observed seizures.

So, today I had a seizure at work. I work as a mechanical designer and the seizure happened at my desk. I have had seizures at work before, in fact, the first grand mal that I experienced happened at work a couple of years ago. This morning before work I had a little aura after my shower and I had a couple of auras at work. The ones at work were quite intense and I had called my supervisor over to my desk. I thought the auras that I had at work were going to become grand mals because they were so intense. My grand mal happened near the end of work and I could not focus at all afterwards(which is normal) and my fiancee came and picked me up early. After my seizure I had an intense pain behind my eyes and a really bad headache. When I got home I just went to bed and was feeling nauseous. I vomited quite a bit and this has never happened to me after a seizure. Has this happened to anyone else? Is vomiting a common after effect for anyone?

My neurologist has put me on the waiting list to be accepted to the epilepsy centre we have at the local university hospital in town. He has put me on this list because I am still having breakthrough grand mals and auras while I'm on medication. I am currently on 1000mg of levetiracetam and 200mg of vimpat in the morning and 750mg of levetiracetam and 200mg of vimpat in the evening. The good thing is that today I received a call from the epilepsy centre saying that I will be able to get in next week. What they are going to do is take me off my medication with my brain hooked up to monitors so that they can observe my brain while I have seizures in a controlled environment. Hopefully this will give them an idea of where in my brain the seizures are occuring and something more can be done to control them.

Anyways, I just wanted to write about my seizure and ask anyone if they have been to an epilepsy centre where they do this practice of observing controlled seizures. And to find out if there have been any positive outcomes from this.

EHE

 

[jayde-101]

Hi and welcome

First of sorry your still having seizures and auras

The vomiting after could be part of your post-ictal stage you mentioned you had a bad head ache which then could have caused the vomiting ...

Have you ever had a eeg? ... Or a video inpatient eeg before ? ... Im assuming that its the same they will keep you in hospital for said amount of time hooked up to a eeg ... Some may reduce meds and some may not

Keep us up to date hope all goes well x

 

[CQ:)]

Hello everyone,
My grand mal happened near the end of work and I could not focus at all afterwards(which is normal) and my fiancee came and picked me up early. After my seizure I had an intense pain behind my eyes and a really bad headache. When I got home I just went to bed and was feeling nauseous. I vomited quite a bit and this has never happened to me after a seizure. Has this happened to anyone else? Is vomiting a common after effect for anyone?

My main seizures have been auras & complex partials but when I do have a Tonic Clonic I usually have a massive headache then vomit afterwards & it usually takes me a couple of days to feel 100% again.

The good thing is that today I received a call from the epilepsy centre saying that I will be able to get in next week. What they are going to do is take me off my medication with my brain hooked up to monitors so that they can observe my brain while I have seizures in a controlled environment. Hopefully this will give them an idea of where in my brain the seizures are occuring and something more can be done to control them.

Anyways, I just wanted to write about my seizure and ask anyone if they have been to an epilepsy centre where they do this practice of observing controlled seizures. And to find out if there have been any positive outcomes from this.

I am assuming that you will be in for a Video EEG. Usually with VEEG the neurologists/epitiologists want to trigger a seizure to help them find where the seizure activity is coming from. You usually have your meds reduced but everyone is different, some people have been completely taken of their meds while in for a VEEG while others have had their meds reduced immensely, fatigue is a trigger for a lot of peoples seizures so they may sleep deprive yourself.

I had a VEEG in November 2010 (mine was as part of pre surgery testing to see if I could have brain surgery). When I had my VEEG I was on high levels form 3 Anti Epilepsy Meds 400mg Tegrteol (AM/PM), 1500mg Keppra (AM/PM) & 400mg Neurontin (AM/Lunch/PM). the epitiologist took me of the Neurontin (at my request) then over 3 days they slowly lowered my Tegretol & Keppra. I also sleep deprived myself as fatigue & stress are my 2 main seizure triggers. I only had a couple of simple partial seizures which still showed up on the EEG.
When I was finished with my VEEG the epitiologist altered my meds, they kept me of the Neurontin & lowered the Keppra to 1000mg (AM/PM).


Good luck with your stay at the epilepsy centre.

 

[qtowngirl]

welcome eclectic (interesting name!),
don't worry about the vomiting, totally normal, some of us do, some of us don't. same as peeing the bed, some do some don't, really don't put another thought into it

as for the centre, you bet. was there in october for 17 days, had a few partials, simple and complex, and three grand mals. they were more than happy!
i'm wondering though, just from the tone of your post, have they fully informed you of what the centre is really for? i'm hoping you know going under video to try and find your seizure focus is in the end for brain surgery. it's not to see where it is and what med will work best, it's strictly to see what they can find and if it's operable.
i found the centre not so bad. tied to a bed but you can keep yourself busy, bring lots of books and your laptop. good luck and keep us posted!

 

[eclectic hectic epileptic]

Yes, they've explained it somewhat. I live in an area that is leading in epilepsy research and I will have a wireless EEG hooked up as they observe me having seizures. Sounds just like what you're talking about, but I haven't heard them call it a 'video EEG'. They're doing this because they have not found anything in my brain causing the seizures. I've had an ECG, two MRIs (one full body), several EEGs and a spinal tap when I was in the ICU after I had a status epilepticus. They're thinking the seizures are occuring in my left temporal lobe because they saw a 'dark area' after my very first seizure, but they think it was a temporary result from my seizure and have not found anything since.

I am aware that the main part of this is to see if surgery would be an option, but I'm not going to get ahead of myself.

I really appreciate the feedback and responses to my posts on here! This is a really good forum.

EHE

 

[2ndchances]

Welcome to the EHE! Glad to hear that you'll be able to get into the epilepsy center rather quickly! I was in an 'Epilepsy Monitoring Unit' (EMU) from Dec 12-21, 2012, and I'll second what qtowngirl said... bring books, laptop or anything else that will help keep you busy, especially if they'll want to sleep deprive you. My stay resulted in confirming that my seizure focus was in the same area I'd had surgery in 2001, and had more scar tissue remaining that was just removed on April 29th.

I sincerely hope you get all the answers you're looking for, all the best!

 

[eclectic hectic epileptic]

So I got a call from the epilepsy unit and I am next on the list! My neurologist moved me up on the list since I have still been having breakthrough grand mals and I should be getting in within the next week! I'm pretty excited to go in and see what they can find out. And I'm going to record my seizures so I can finally see myself having them! I've asked people at work to record them, because that is where they seem to happen mostly, but things just get to hectic and it just slips everyone's mind lol I will keep you guys posted while I am in there!

And on another topic, I saw a VERY interesting show on BBC. It was called 'Broken Brains' and it looked into different surgeries to control epilepsy. One surgery was really interesting called a 'Corpus Collosotomy' It is where they sever the corpus callosum, a white matter area of the brain that connects the the left and right hemispheres. It went through some effects that it can have due to each hemisphere not being able to communicate with the other. And there are some interesting effects. It went through one lady who developed 'alien hand' Where she could not control her left because her corpus collosum was not fully severed and there was a 'power struggle' in her brain to try to control her left hand. Does anyone know of someone who has had this procedure done? And any effects of it?
Also, they talked about a man known as 'H.M.' who had a surgeon remove his hippocampus and surrounding cells. This caused him to not be able to form any new memories. Anyway the show was very very interesting and I would recommend anyone interested in the human brain to watch it.

EHE

 

[Nakamova]

That's great news -- I hope your appointment goes well, and you can get some relief.

 

[eclectic hectic epileptic]

So my first call from the epilepsy unit was cancelled and my spot was given to an emergency patient. But I am now in the unit and I'm all hooked up to the EEG. I'm waiting to see the doctor and they will start lowering my meds to see if they can observe a few seizures. I will keep you guys posted about how things go.

EHE

 

[Nakamova]

Hope it goes well and you get some helpful results...

 

[eclectic hectic epileptic]

So they've lowered my meds from 1000mg of keppra and 200mg of vimpat in the morning and 750mg of keppra and 200mg of vimpat in the evening to 250mg keppra and 50mg vimpat twice a day.
It's day two with my meds lowered and so far I'm feeling normal and fine. I wish they would just stop them altoether and let me start floppin! lol I know they won't do that but its day three in here and I'm getting bored and just want to have some seizures and get outta here.

EHE